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The Association of Health Literacy with Transition Readiness Among Adolescents and Young Adults with Spina Bifida
James T. Rague, MD1, Soojin Kim, MD2, Josephine Hirsch, BA1, Theresa Meyer, RN, MS, CPN1, Ilina Rosoklija, MPH1, Jill E. Larson, MD1, Vineeta T. Swaroop, MD1, Robin Bowman, MD1, Diana K. Bowen, MD1, Earl Y. Cheng, MD1, Elisa J. Gordon, PhD, MPH3, Daniel I. Chu, MD, MSPH4, Tamara Isakova, MD, MMSc3, Elizabeth B. Yerkes, MD1, David I. Chu, MD, MSCE1.
1Ann & Robert H. Lurie Children's Hospital of Chicago, Chicago, IL, USA, 2University of British Columbia, Vancouver, BC, Canada, 3Northwestern University Feinberg School of Medicine, Chicago, IL, USA, 4University of Alabama at Birmingham, Birmingham, AL, USA.

Background: Health literacy (HL) has been shown to play an important role in transitions of care in adult populations, with low HL being associated with worse health outcomes. The role of HL in the pediatric-to-adult care transition has been less well studied. Among adolescents and young adults with spina bifida (SB), high rates of unsuccessful transition to adult care have been shown, but how patient HL impacts transition readiness remains unknown. We aimed to assess the association between HL and transition readiness, hypothesizing that higher HL would be associated with higher transition readiness. Methods: Prospective collection of patient-reported questionnaires between June 2019 and March 2020 was performed for all patients ≥12 years old with a diagnosis of SB (myelomeningocele and non-myelomeningocele) seen in our multi-disciplinary SB center. Questionnaires were available in English and Spanish. Patient demographic and clinical characteristics were obtained from medical record review. The primary outcome was total Transition Readiness Assessment Questionnaire (TRAQ) score and the primary exposure was HL assessed by the Brief Health Literacy Screening Tool (BRIEF). Univariable analysis was performed to assess variation in TRAQ score for each demographic and clinical characteristic. Nested, multivariable linear regression models assessed the relationship between HL and TRAQ scores, adjusting for potentially confounding covariates. Results: Of the 232 eligible patients seen during the study period, 200 (86.2%) completed both TRAQ and BRIEF. Most were <18yo (55.0%), female (52.0%), and had myelomeningocele (62.0%). Median TRAQ score was 3.3 (interquartile range 2.4-4.2). Inadequate HL was reported by 33% of individuals, with marginal HL and adequate HL in 30% and 37%, respectively. In univariable analysis, HL (Figure), age, type of spina bifida, level of education, self-administration versus completion of the questionnaires with assistance, ambulatory status, and urinary incontinence were associated with total TRAQ score. In all nested, sequentially-adjusted, multivariable models, higher HL remained a significant, stepwise, independent predictor of higher TRAQ score (Table). In the fully-adjusted model, having adequate and marginal HL compared to inadequate HL were associated with an increase in total TRAQ score of 0.54 (95% CI 0.21-0.87) and 0.39 (95% CI 0.07-0.72), respectively.
Conclusions: Patient-reported transition readiness is associated with HL, even after adjustment for education level and other demographic and clinical factors. Developing and implementing HL-sensitive care programs during the transition process from pediatric to adult care may improve patient transition readiness.
Figure. Box-and-whisker plot demonstrating variation in total TRAQ score based on patient reported level of health literacy (BRIEF score).

Table. Multivariable, nested linear regression models of the association between health literacy and total transition readiness score.

Linear Regression Modela (n=200)Regression Co-efficient (95% CI), p-valueModel R2 value
Inadequate HLMarginal HLAdequate HL
Model 1bReference0.83 (0.48-1.18), <0.0011.13 (0.80-1.46), <0.0010.19
Model 2cReference0.67 (0.37-0.99), <0.0010.94 (0.64-1.25), <0.0010.40
Model 3dReference0.61 (0.30-0.93), <0.0010.86 (0.55-1.16), <0.0010.44
Model 4eReference0.40 (0.08-0.72), 0.020.54 (0.22-0.87), 0.0010.49
Model 5fReference0.39 (0.07-0.72), 0.020.54 (0.21-0.87), 0.0010.50
a. Each model iteration represents the addition of confounding variables, keeping all variables in previous model. b. Model 1. BRIEF score only c. Model 2. Addition of individual demographics (age, sex, race, spina bifida type) d. Model 3. Addition of mobility/functional factors (ambulatory status, functional level, shunt status) e. Model 4. Addition of education factors (level of education, self-administration versus completion with assistance) f. Model 5. Addition of bladder and bowel factors (primary bladder management strategy, bladder incontinence, bowel incontinence).

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